Our Chief Executive, Jane Plumb MBE, shares how it all started, 26 years ago:
Tuesday, 19 March 1996
“Twenty-six years ago today, 19 March 1996, started normally. I was 25 weeks and 4 days’ pregnant, expecting my second child and spent the day at home with my first child, Oliver, who was 3 years old at the time.
Late afternoon I started to feel a little odd – nothing specific, just mildly uncomfortable. I remember not wanting to sit on the floor to play with Oliver which was unusual for me. A couple of hours passed and the feeling that something wasn’t quite right didn’t go away, it got stronger. I wondered if perhaps I was having the odd mild contraction. Surely not!
I decided a quick trip to the local hospital just to get me checked out would be good. Having sorted childcare for Oliver, I left a note on the stairs for my husband saying I thought I might be having early contractions and where I was going. He was due home from work in the next hour or so, and I knew the chance of his answering his phone before then was low. A friend insisted she drive me to the hospital – I’m pleased she did. On the way I had a very definite and lengthy contraction. I tried to call Robert, but he didn’t pick up. I left a message asking him to come to the hospital as soon as he could.
I arrived at the hospital at about 7pm – by then I knew I was in labour. In a side room, I was asked loads of questions and examined, and they listened for my baby’s heartbeat. My membranes were bulging, I was in labour, and my baby’s heartbeat kept dipping. The original plan to try and delay birth went out the window – Baby was on their way. Just as they were about to move me to a labour room, Robert arrived, looking as terrified as I felt. We both tried to be calm.
Having had an incredibly long labour with my firstborn, I was expecting the same. No chance. Within half an hour, our baby was born – another gorgeous son! He looked so small and fragile, and understandably was whisked off to the Special Care Baby Unit (SCBU) almost immediately. Robert joined him as soon as he could, but I wasn’t able to – a retained placenta and other issues meant I needed a spinal block and some attention, so I wasn’t going anywhere.
They moved me to a side room and a doctor came to tell us that our son was very ill and would be transferred to a hospital with a specialist Neonatal Intensive Care Unit (NICU). I asked if I could see Theo and was told that this wouldn’t be possible – I still had no feeling in my legs and unfortunately couldn’t walk there myself. Robert and I were quite insistent. Close to midnight, they agreed, and we were taken to SCBU. I was in a wheelchair, trying hard to keep sitting upright, which is easier said than done when your legs are pretty numb!
When we got to SCBU, we discovered that the wheelchair couldn’t pass through the doorway. Fortunately, the walls for SCBU were mostly glass so Robert went in, and I watched from outside. Theo was tiny, attached to all kinds of wires and tubes and was very still. We felt so helpless. The team from the other hospital arrived and took him away, promising that they’d take the best care of him. One of the ambulance people said that he’d seen babies smaller than Theo survive and thrive. We wanted to believe him.
Robert was in two minds whether to go home to Oliver, or to go to the specialist hospital to be with our new son. We decided that there was nothing he could do for our new baby, who would be in excellent hands. We both felt that Oliver needed him more, particularly because we knew that, whatever happened, the next days would be turbulent for us all. So, Robert went home, and I tried to get some sleep.
Tomorrow would be another day. Sadly, despite our high hopes, it would be a much harder and much sadder day, another we would never forget.
Wednesday, 20 March 1996
20 March 1996 was anything but normal. I’d woken a couple of times in the night and asked if there was any news on my baby. No, they hadn’t heard anything more than he’d arrived safely at the new hospital and was being stabilised. They were very reassuring.
I remember walking from the loos to my room and hearing someone say, “Has anyone told her?” When they saw me, they moved away. But I wasn’t thinking straight: I was focussed on getting out. About 8am, I was told that I would be discharged around 10am. Robert collected me, and we drove to the new hospital. In the car, we decided on our baby’s name – Theodore. Theo for short. It means gift of God which, given the problems I’d had conceiving, felt very appropriate. We knew Theo faced massive challenges, that the next hours and days would be critical, and we didn’t want him to die without a name.
At the hospital, we headed for NICU. A nurse met us and took us to a side room. A neonatologist came and said Theo was very ill. They’d sedated him, put him on a ventilator and were trying to stabilise him. He wasn’t responding well. There were still things to try, but they were concerned. We asked a few questions, but not many. We wanted to get to Theo’s side.
Seeing Theo in the ‘hot room’, on an open cot, attached to ventilator, plus various monitors and wires was hard. He was the smallest and the sickest baby there. We, of course, saw past all the equipment to our beautiful boy – perfect, so like his brother, but so ill. The staff were amazing – supportive, kind, and professional, clearly wanting to make sure we understood what was going on. Over the next couple of hours, the picture became less and less encouraging. The staff were becoming less optimistic, sharing that with us very gently. The numbers on the machines Theo was attached to were much less gentle – it was clear he was getting worse, not better, despite everything they were trying.
We said to the nurse that it didn’t look like Theo was going to make it, was that right? She said it wasn’t looking good but that she’d get the doctor to talk to us. She agreed. We asked if we could get our son. Oliver, down so he could meet his tiny brother – yes. She asked if we’d like Theo to be baptised – yes, please. The chaplain arrived and, even in such a bleak situation, he found some words of comfort. Theo was baptised Theodore Leslie Plumb in a deeply moving service.
The doctor confirmed that there was nothing more they could do for Theo. She wasn’t sure what the issue was, but nothing was making any difference: only the machines were keeping Theo alive. She suggested waiting until Oliver arrived, and then removing all the machines from Theo apart from the morphine drip, bringing him to a side room with us where he would die naturally and without any pain. We agreed.
Oliver arrived with my mother, both clearly apprehensive in such unfamiliar surroundings. We introduced them to Theo, which was intensely bittersweet. We explained that Theo was so sick that the doctors couldn’t make him better. After lots of questions, we were sure Oliver understood, and said to the nurse that we were ready. Of course, we weren’t, but how could we ever be?
Once everything apart from the morphine drip was removed, we took Theo to a side room. We held him, hugged him, talked with him and hoped he could feel the huge love we all had for him, packing a lifetime of love into just 30 minutes or so. The second time the doctor came in to monitor Theo, she confirmed that his heart had stopped. We stayed together in that room for an hour or so longer. Grieving. Not wanting to leave. But we couldn’t stay – we asked the nurse if she would sit with Theo as we left so he wasn’t alone. She agreed, so we laid him in the little Moses basket and said our goodbyes.
As we were leaving the NICU, the neonatologist called us. She told us that, she wasn’t sure, but she thought Theo had died because of an infection caused by group B Streptococcus, or group B Strep. We’d never heard of it. I’m sure she said more, but all I can remember of what she said was that I couldn’t pass it on to Oliver, there was no reason not to have another baby in future, and it was just really unfortunate – it wasn’t anything I’d done. She said they’d like to run more tests and that they’d let me know what they found.
So, we left. We went home to a world that had profoundly changed since we’d last been there.
Robert and I set about finding all we could out about group B Strep and trying to give Oliver as much normality as possible. We were incredibly fortunate with the people we spoke to, and the connections made. Our GP was wonderful, as was the midwife who came to see us after we were home. With snippets of information, we tracked down a doctor working on group B Strep, Robert Feldman, who was so generous with his time and expertise.
Within a few weeks, we learned that most group B Strep infection in newborn babies was preventable and that in other countries, notably my husband’s homeland of the USA, routine prevention strategies were in place. But there was nothing in the UK – almost no-one I spoke to had even heard of it.
We set up a charity, Group B Strep Support to help stop it from happening to others – to raise awareness, support families, support research and campaign for change. Doctors Philip Steer and Rodney Rivers joined Robert Feldman on the medical advisory panel, and since then, there have been so many others involved – mums, dads, grandparents, friends, doctors, midwives, MPs and so many others – far too many to name, but they know who they are.
Thank you for joining me in remembering those two days back in 1996.
Our experience led to us founding Group B Strep Support 26 years ago. Please give generously* to help us keep fighting for babies to get the best start in life and be protected against the horrors of group B Strep infection.